Little Boy Lost

When Christian was a baby, he was the happiest, most social baby I'd ever met. He'd smile and coo at everybody, babbled to strangers, could get a smile from the most stoic person. There aren't many pictures of him without a huge smile on his face. When he was about a year old, he started talking and had a huge vocabulary. He was in the delivery room the night Hailey was born and we have him on video, pointing to her and saying, "What's that?"

Shortly after Hailey's birth, that all changed. My outgoing, talkative little guy because shy and reserved. It's hard to remember exactly, since I was so busy with two little ones and dealing with PPD, but some time between about 19 months and 22 months, he pretty much lost all of his speech. He became obsessed with trains and would repeat the phrase "choo choo" for hours. He got his first train set for his second birthday and he would spend hours at a time rolling the train around the track saying, "choo choo choo choo."

I knew something was wrong. It was so obvious to me. First, I talked to our parent educator through Parents as Teachers. She assured me, he's fine, you're just a worried inexperienced mom. I googled and read. I knew about Autism, but only the severe type, but I knew that speech regression was a big sign. In my research, I found that he had many signs going back to birth. I talked to our pediatrician who told me that kids regress when a new baby comes into the family and that Christian was probably traumatized because I had been sick and in the hospital for 10 days and I was a SAHM and his whole world was turned upside down. I left the pedi feeling very defeated and guilty.

I continued to research Autism and figure out what I needed to do. When he was 2 1/2, I called the county office for First Steps, Missouri's birth to 3 program. Our county was incredibly back logged so nothing had been done between January when I called and April when we moved to a neighboring county. His case was transferred to our new county and things moved a little faster. We met our incredible service coordinator, Susan, shortly after. The first time she met Christian, she talked to him, played with him, and then told me that she believed he was on the Autism spectrum. Finally, someone else was seeing what I saw, someone knew that he needed help.

Christian had evaluations and we went to a new pediatrician. Our new pedi's first recommendation was for Christian to see a neurologist. I made the appointment, which took about 5 or 6 months to get. We got his evaluation results back and his speech and fine motor skills were very delayed. He began speech and occupational therapy immediately. We also started the process to get him into our school district's special needs preschool. When we finally saw the neurologist, he diagnosed Christian with PDD-NOS (pervasive developmental disorder, not otherwise specified) but said as he got older, it might end up being Asperger's Syndrome.

At that point, nearing his 3rd birthday, Christian said very few words, mostly grunting and pointing to meet his needs. He had a very self-limited diet due to sensory issues. He spent his time lining up his trains, playing with them on his train table, and he'd become obsessed with dinosaurs. I remember very clearly the first day we went to the preschool to look around. Even though there were children his age all around, it was as if Christian didn't even see them. He went right to the dinosaur toys and was in his own little world.

Intervention was a miracle for Christian. The preschool was speech intensive, with a dedicated speech therapist in each class. He started school in September and by December, he was talking in full sentences, with a vocabulary far beyond his age. A lot of it was echolalia and he couldn't carry a conversation at all. Christian talked about what he wanted to talk about and that was it. If you tried to ask him questions, he'd talk about dinosaurs. He was a sponge that soaked up the things he heard and repeated them as needed. As preschool progressed, I began seeing glimpses of the little boy I thought I'd lost.

By the time Christian moved onto Kindergarten, "by the numbers," he no longer qualified for special services. Fortunately, by that time, advocating for my children had become second nature and I refused to sign off on a plan that didn't include support for him. We sent him to the elementary school in our district that had an "Autism room." It was the first year for the classroom in that school and things were chaotic. Christian kind of fell to the wayside. His classroom teacher didn't know anything about Autism or Aspergers. When he did well on things, the teacher would tell me about them with this sense of awe, as if she regarded Christian as having a mental disability or low intelligence. In kindergarten, we also began to encounter bullies. Kids picked on him because he was "weird" and "annoying." He was also the smallest kid in kindergarten and, with his late July birthday, one of the youngest (MO state cut off is July 31). There was a lot of conflict with the entire situation, so Eric and I made the decision to move Christian to the home school. Fortunately, the Autism room also moved to that school as well and he continued with the same teacher the next year.

Elementary school has been a battle. As Christian gets older, kids get meaner and we've had a lot of issues with bullying. We've also had to fight to get the accommodations that he needs, like more concrete instructions for projects, defined guidelines for the teachers' expectations, and things like that. He's very rule oriented and doesn't like to go against anything his teachers tell him, even simple things like considering different creative options for projects other than what the teacher suggested.

One of our biggest struggles is that people seem to think that because Christian is so smart, he doesn't need help in other areas. He has an IEP, but we fear he will lose it at some point because his evaluations and testing always come back with good results. But still, he struggles with nuances and social situations, with organization and focus. So I fight for him. I advocate, I email, I call, I complain, I yell, I'm "that mom." When I call the school, the principal probably groans outloud and says, not her again.

My goal for Christian is more than graduating high school (he will) or going to college (he will). My goal is for him to learn to live in a neuro-typical world. He can't change the world to suit himself. But, at the same time, with a newly released Autism rate of 1 in 88, our world DOES need to accept and welcome people on the spectrum. Christian can't change who he is and I don't want him to. I do want people to try to understand him a little better. I want people to understand that many of his issues are beyond his control. When he refuses to eat the meal served at a social event, he isn't being a spoiled brat or too picky. He has sensory issues which prevent him from eating certain things, he has routines that he thinks must be followed and if they're broken, he can't cope well. He doesn't perceive personal space, touch, jokes, and innuendo like others do. Christian can't change having Asperger's any more than he can change having brown eyes or being right handed. It is part of who he is--who 1 in 88 of our children are-- and he needs acceptance. They all do. They need us to work for them, advocate for them, tell our physicians and lawmakers and school teachers that the children need their help.

I'm one of the lucky ones. For the most part, I got my shining, outgoing, loving little boy back. I thank God every day for that. I am proud to be the mom of such an amazing son who just happens to have Asperger's Syndrome. I'm lucky to experience this loving, gentle, brillant child.